ALS Network Statement on Passage of the Federal Funding Package

ALS Network celebrates the power of advocates whose sustained action, working alongside bipartisan leaders in Congress, helped secure meaningful new investments in ALS research in the fiscal year 2026 (FY26) federal funding package. This progress supports people living with ALS and strengthens several critical research and public health programs.

Across California and Hawaii, advocates engaged with congressional offices. As a result, the FY26 funding package includes $45 million in new increases for ALS research and related programs. This includes $90 million for ACT for ALS at National Institutes of Health (NIH) and a new $30 million investment for ALS research through ARPA-H. The package also sustains funding for essential programs at the Department of Defense, NIH, and Centers for Disease Control and Prevention (CDC) that support the ALS research ecosystem and public health infrastructure.

“This moment proves what’s possible when advocates refuse to let ALS be ignored,” said Sheri Strahl, MPH, MBA, president and CEO of the ALS Network. “Because of sustained, focused action and strong bipartisan leadership in Congress, this funding package delivers meaningful new investments that will accelerate research, strengthen public health programs, and bring us closer to effective treatments and cures. From California to Hawaii, advocates showed up, made their voices heard, and helped secure critical funding for NIH, ARPA-H, the Department of Defense, and the CDC. These investments matter because they translate directly into progress for people living with ALS today and hope for tomorrow.”

Key ALS funding outcomes in the FY26 package include:

• $90 million for ACT for ALS at NIH, a $15 million increase over last year
  
• $30 million for ARPA-H ALS research, a new investment
  
• $145 million for NIH ALS research, level funding
  
• $40 million for ALS research at the Department of Defense through CDMRP, level funding
  
• $10 million for the CDC ALS Registry, level funding
  

While ALS Network is encouraged by the progress reflected in these final numbers, several priority requests were not fully met. ALS Network advocated for $100 million for ACT for ALS, $80 million for the Department of Defense’s CDMRP ALS Research Program, $15 million for the CDC ALS Registry, and $180 million for NIH ALS research. We will continue advocating for the full funding that is necessary to urgently accelerate scientific discovery.

ALS Network is grateful to the bipartisan champions in Congress who partnered with the ALS community to advance this funding. We also thank the advocates across the ALS community whose sustained engagement helped move this progress forward. ALS Network will continue advocating for increased, science driven federal investment, because sustained funding is essential to advancing better treatments and ultimately finding a cure.